Hello, yesterday 22 june 2011 we went to the doctor again and she gave us an advise that seems to help! - she is 2 months old now and her weight is 5,32 kilo and she is now strong enough to eat less. She is supposed to drink 800 ml (5 feedings of 160 ml) and we are trying to stop feeding through the NG-tube for 2 feedings. She drinks about 60 to 90 ml from the habermann bottle now and before this was 20 to 40 ml, so I say this is an improvement! She has to drink 500 ml at a minimum so we feed the remain of her other 3 feedings of 160 ml through the NG-tube. feeding time scheme: 7 hours AM, 11h AM, 3h PM, 7h PM, 11h PM. So it does get better when they grow stonger and older! Be patient. Sylvia

--Previous Message-- : Hello, back again. : My daughter was born 14 april 2011 with PRS. : We had to stay 15 days in the hospital and : went home with a heart-monitor and a : NG-tube. She drinks 30 to 40 mililiter from : a bottle and has to drink 120 mililiter. The : remaining I give to her in the NG-tube. We : can call a medical organisation when she : pulls out her NG-tube, we don't have to do : that ourselves in the Netherlands. : : She is 2 months old now and the drinking : does not improve much. she drinks from the : Habermann bottle. with 3 stages, stage 3 : goes too fast now, so we have an improvement : to stage 2. : : tips from our physical specialist : (logopedist) : - breathing pause after every 5 seconds : - put her on her side and not on her back : while drinking : - do not give the bottle when she cries or : streches out all the time. : : We think she has also Stickler syndrome : because this is diagnosed for myself and my : twinsister (we are 30 years old). We have : eye problems (contact lenses, retina surgery : and cataract). We only know about Stickler : since Elly was born. So we don't know about : other effects of Stickler yet. 13 july to : hospital again for more information. : : My other two kids (3 and 2 years old) do not : seem to have any sign of Stickler yet and no : PRS. : : If anyone has feeding tips, please let me : know! : If you have questions, do not hesitate to : email me sylviaout@gmail.com : : thank you! : --Previous Message-- : Hello! : : I am Sylvia from the Netherlands. Just want : to introduce myself, I have not yet time for : a story yet with my 2 other kids coming home : from the playground : : :